Friday, March 25, 2011

No news is good news

Ty had a pretty uneventful day today.  We had one minor scare around 8PM when his face and arms turned red as a lobster, but I remembered hearing about "red man syndrome" before and it is associated with the antibiotics he is on... so I wasn't too concerned.  The nurses came in, followed by a slew of residents who ordered a gazillion unnecessary tests.  All he needed was a little benadryl and Ty was back to normal.

Other than that, it was a nice, quiet day.  Ty began his steroid taper today, which is the most promising news we've had lately.  We have steroids to thank for that gorgeous dark hair that's coming in, but we also have steroids to thank for the infections, the mood swings, the myopathy and those beyond puffy cheeks!  Ty will begin looking and acting more like himself once he is off the steroids.  And, we will be able to begin a more aggressive physical therapy regimen to work on the atrophy in his arms and legs.  The atrophy has gotten so bad that his poor arm is covered in broken blood vessels just from the blood pressure cuff.  That just started happening today.  I can't wait to see him build up his strength in his limbs again.  I think it will do wonders for him mentally.

Here are a couple of recent pictures.  Super Ty at home in full costume thanks to an amazing care package Ty recently received, and there's another one from him in the hospital today when he first came back from radiation therapy. 



Goodnight wishes, hugs and kisses from TY!

8 comments:

  1. Those silly residents..too funny, I can just picture their faces, but better safe than sorry I guess!

    Ty looks fantastic!!!!!!!!!!! He is such a trooper and always smiling!! My kids and I love Ty to pieces we don't even know him, but just do!! Your story has truly brought my family closer together and I thank you for sharing! Cindy you and your husband truly are the best parents, completely amazing!

    I know that it stinks but I am happy he has to stay here, so must pressure and stress to drive back and forth for you all and now they can watch his every move. In the meantime, until you can get home I am here for you. I know I must sound like a pain in the butt and I know you do not know me, but I am not scary at all...well maybe early in the morning when I have pillow face. Anyway, my point is I know Cindy you don't want to leave Ty's side so please if you need anything I am here all week and easily available, right across the street or in the building. I can bring you whatever you need coffee, snacks, games, hugs, maybe a wine break for Cindy, dinner; whatever it is. 570-997-2937.

    Sweet dreams and in our prayers always!!
    GO TEAM TY!!

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  2. Sweey Baby Boy... Keep strong these days, you are in good hands, you have your mom, dad, and Gavin to take care of you and not to mention a Great medical staff :O)

    So many love you and are praying for you. You are such a sweet little man :O)

    Hopefully you will get to go home asap :O)

    Love ya,
    Mary E. King, and the rest of the King family
    GA

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  3. SUPER TY!!!! So glad he got the costume...hope it brings him more and more Super Powers...Thanks for posting the picture. The girls were so excited to see him in it!!!!

    Thoughts and prayers everyday...
    The Damiano's

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  4. What a beautiful boy, even when he is going thru so much. You have a very special son, one who is gonna kick this cancers butt and do GREAT things with his life. My familys prayers and positive thoughts always going your way. Much love to all of you.

    Elaine Hinkle and family

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  5. AHHH red man syndrome...was he on Vancomycin by any chance? I can't believe how fast Ty's hair is growing back! He is an amazing boy with an amazing family God bless all of you...Love, prayers, and good thoughts always...
    Ginger and the Ragusa clan

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  6. Cindy,

    Look at that adorable face! Always thinking about Ty! Love the super Ty costume! He looks adorable!

    Always keeping our fingers crossed and praying for you guys!

    Joy Marielle
    Baltimore, MD

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  7. SUPER TY!!! Glad you had an uneventful day - you needed one. So happy to hear about the steroid taper. I have no doubt that gainig strength in his arms and legs again will do wonders for all of you.

    Hugs and kisses from IL,
    Maria

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  8. No new is good news. And I'm glad you are a medical expert now so we can chat about RMS, CSF, SVT...

    I know he doesn't feel so well but he looks pretty darn well in his pictures. Plus he looks like SUCH a good boy!!! He's too sweet!

    Kisses,
    C

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